Newly Diagnosed, Confused, Scared, All of the above

[BrokedownPalace]

Hi all,

I had my MRI today due to hearing loss for the last 7 years. No other symptoms are present aside from Tinnitus. I assumed that the loss was from going to concerts without ear protection, but lo and behold I have a 2cm AN on the left side.

I'm terrified of the possibilities of surgery, managing my life, work, losing function in my face, and everything else. My anxiety is essentially through the roof at the moment.

Having a very hard time functioning right now and I dont even know what's next.

Mainly just posting this to vent and get feedback from people who have been there before. Thank you all.

[MarlaB]

Welcome to the club that NOBODY wants to belong to. I'm so glad you have found us, (how did you find us so fast?) Here you will find support, encouragement, and a wonderful community of new friends.

To respond directly to your concerns, I, for one was EXACTLY in the same headspace as you. That was 15 years ago and life is good.

I hope you have reached out to the ANA to sign up for a temporary membership. You'll have access to more information than you know you need. Also, ANA has support groups all over the country, some are virtual, others in person. All of them are listed on the website.

And finally, Remember to breathe, seek professional help for your anxiety if necessary, and know that you are not alone.

Marla B.
Forum Admin

[mwatto]

Hi there I recall also being terrified.

I had little support at the time in Australia and in fact diagnosed myself after two years of being told ironically, it was "all in my head" by the doctor I was seeing. By that time it had grown to 2cm.  After I insisted on an MRI, a nurse called me at 8am- "Sorry to inform you, you have a brain tumor - no, I cant say what kind but come back at 5 pm." When I arrived crying, the GP said: "Well you were right after all it was an AN- at least its benign." I then found my own specialist by googling!

Well onwards 5 years post CK and I am doing really well as you can see on my posts etc. I would say, lean on this forum. There are excellent videos and so much kindness in this community! My org in Australia was really no help at all at the time and I joined this one. I am still here and sharing info.  We all understand and can relate to your anxiety and we have all come though fine. Feel free to message me anytime.

[BrokedownPalace]

Hi all,

Thanks for the kind words. I found this forum prior to my diagnosis a few weeks ago when I was first told of the possibility of having an AN, was hoping I wouldn't need to come back, but here we are! I did request the temporary welcome package from ANA as well last night.

I have an emergency appt with my therapist today luckily as well to talk about it, and am in the NYC area so already working to make appts with some of the drs that have been mentioned on the forum.

Definitely will be looking further into the support groups for further help as it feels weird telling friends and family about this. Would love to have direct contact with people who have similar experiences.

Glad you both are doing well after your respective procedures, now determining what is the right path for me re: radiation or surgery.

[DanFouratt]

Become your own advocate and do the research.  After I decided to leave the watch and wait stage I was struggling with what to do with my tumor. I research a lot, my wife said I became obsessed with it.   There are many great videos in the library.  I created a chart of each of the procedures both surgical and radiation. After seeking several (8!) professional opinions I went with radiation slightly over a year ago.  It was best for me. I found that taking with surgeons they wanted surgery and oncologists wanted radiation. I had my procedure a little over a year ago and am happy with the outcome.  If you want my chart please email me at dan4att@gmail.com.  To be frank the AN decision was a lot more taxing then the decision on what to do with my faulty heart. Again there were options but what to do was an easy decision. Good luck on your decision journey.  Dan

[skier]

Hello,

Sorry you are dealing with an acoustic neuroma. Hope this chatboard can help you get used to discussing the problem. We are all patients/former patients, not doctors. We can't advise you, but we can tell our stories for what they might be worth.

I'm coming up on my one-year anniversary of Translab surgery, for my Acoustic Neuroma, which was just under 2cm on its longest side. I, like so many others on the chatboard, was in Watch and Wait about two years.

In that time, I also worried a lot and did a lot of research. I had about six consults with surgeons and/or ENTs who did/or would refer me to radiation oncologists for radiation.

I also had: Hearing loss to the point of deafness in the affected ear, before treatment; balance trouble; facial tics/microspasms;  tinnitus; and some signs of other complications.

I chose surgery, ultimately, and I have had an excellent outcome. You can flip back to my other posts for more detail, but I just want to say that the choice between longer observation, radiation treatment, and surgery is different for each person/patient because the acoustic neuroma can have many different presentations.

For me, in my last period of MRIs, the growth rate was greater than normal, which leading MDs say means surgery is the better option, statistically. I went with surgery for that reason.

After deciding on surgery, I went for the best team of surgeons that I could access.

After making the surgery date, I was calmer than I had been in two years, and it all worked out great.

I don't know what your decision path will look like, but the best surgeons/doctors/specialists out there will help you understand what the best decision for you might be. It depends on so many factors.

It's a tough call sometimes, and other times it not a tough call. Tumor size, your symptoms, growth rate, your wishes, your hearing loss situation, etc. all play a role. Sometimes one factor alone becomes the deciding factor.

I wish there was a simple treatment decision tree, but there just isn't.

And choice of MD is super important. Please look for a medical center that has an excellent reputation for treatment of acoustic neuromas. That is key.

Take care, and remember, there are very many good outcomes overall. It's very frightening, and can be life changing, but it's not insurmountable. Wishing you all the best.

Skier

[donjehle]

Great reply, skier!

[BrokedownPalace]

Really appreciate all the shared stories. Doing my best to do all the research I can without getting wrapped up in the anxiety stages if I spend a few hours browsing the fb group or similar. I can see why scheduling the surgery would have a sense of relief as there's so much unknown in terms of next steps right now. It is really nice to have a group around this who understands, looking into support groups in my area as well.

[DanFouratt]

Reach out if you need anything, I will speak for the others we are here to help.

[Derby]

Really appreciate all the shared stories. Doing my best to do all the research I can without getting wrapped up in the anxiety stages if I spend a few hours browsing the fb group or similar. I can see why scheduling the surgery would have a sense of relief as there's so much unknown in terms of next steps right now. It is really nice to have a group around this who understands, looking into support groups in my area as well.

Did you decide on a treatment plan? I also had a 2 cm AN and I opted for radiation. Much less anxiety inducing than neurosurgery, IMHO. I had had hearing loss for 10 years before diagnosis, which, like you, I had chalked up to my concert-going habits. I'm about 6 months out from my treatment, with no significant change in symptoms, knock on wood.

I hope your inital anxiety has been somewhat aliviated with information. Knowlege really is power!